For two whole weeks we did the same routine, about 12-14 hours with Betty, then back to the House, eat, shower, express. James went home a lot. He would go and get me more clothes, pants, whatever. I wouldn’t go home. I didn’t want to ever go there, not without Betty. I don’t know how James managed it. There were hypnobirthing posters all over the house. All of my positive mantras plastered over the kitchen and bathroom. A picture of how my baby should be positioned inside me to allow for a smooth labour. I would sit on the loo and look at this picture, trying desperately to make sure baby was in the right position and that my labour would be smooth and go to plan.
At the House I would stare at my reflection in the bathroom, my face and my body. I’m not sure what I was thinking, if anything at all, but I would stare. I was still much bigger than I had ever been but I didn’t care at all. I was wearing one of Carols dresses and Fluff lent me one of hers too. They fitted nicely and mum was so chuffed that at long last, her clothes fitted me! I lived in flip flops as my feet were so puffy and also, remember how hot it was this summer?! The NICU in Southampton did not have air conditioning, or if it did, it was hard to notice as Betty’s incubator was heated from above and below. I felt like a chunk of bacon, slowly cooking between the lamps!
I got used to the routine in the NICU and although I didn’t fully understand what was being discussed, I had a vague idea of what was happening. One of the medics was a professor and I will refer to him as Prof through the blog. I liked him. He and Carol got along well, I could see that as soon as they saw each other. Prof took a real interest in Betty, maybe because he was a friend of mums but I think he was genuinely intrigued as many of the medics were. One morning, at about 2 weeks in (I am relying on James for these details) we were called early in the morning. The NICU team would call us if there was anything at all to tell. My heart leapt out of my chest each time a call came through from a withheld number, I knew it was them and I feared the worst each time. During this call we were told that Betty’s chest drain was blocked. The night shift team of ANP’s and medics were honest and told us that they were on their fourth night shift and as it was about 4am, they didn’t feel it would be safe or appropriate for them to start moving or clamping the drain. The reason they clamped the drain was to ‘test’ whether or not it was still needed. Chest drains are very invasive and so it is better to test it by clamping than removing it and having the possibility of re-inserting it.
We appreciated their honesty and we agreed that it would be best to leave the chest drain well alone until a set of fresh eyes arrived on the day shift. The day shift consisted of the Prof and he was the one that told us “I don’t think it’s blocked, I think it has drained all the fluid it can”. In order to test his theory the nursing team had to move Betty into a different position a few times throughout the morning to see if any more fluid drained off. Small amounts of fluid appeared which showed that the Prof was right and it was not blocked but instead there was very little fluid left in Betty’s chest. Because of this it was decided to clamp the drain for 24 hours. All of this was so bewildering to me. But James was doing his stern nodding face, with one hand on his chin and the other folded across his middle. That is his serious face. He means business when he looks like that! And I knew he would help me understand it all later so I just nodded……completely bemused, a nodding, half grinning girl that wanted all of this madness to stop.
With the chest drain still in situ, the medical team decided that now would be a good time to start giving Betty some actual food via her NG tube. They wanted to keep the chest drain in and her fully ventilated to reduce the risk of any problems with too many changes. Betty’s first feed of my breast milk was 3.5ml…….! At the time this seemed like an enormous amount to give her but I trusted the decisions made by the team. Until this point Betty had been receiving total parenteral nutrition (TPN) only, which is basically all the essential vitamins, electrolytes, fats and minerals that we all need to survive, it was delivered intravenously, she had never had food in her little belly before.
This was also the same time that the decision was made to place a ‘long-line’ in Betty (in her little foot). A long line is a fine plastic tube 10 – 15 cm long that is threaded into one of the baby’s small veins in the arm or leg until it reaches a point where the veins are much larger, usually just outside the heart. This was another worry as it was another potential route for infection and with the line leading directly to her heart, any infection could be life threatening. A constant battle between risk and benefit, the ultimate decision and I have so much respect for the people that make these decisions.
A quote from my little black diary, date 6th June 2018
“Ventilator staying in situ while we wait to see how Betty copes with food and to see if chest drain changes in colour/quantity. Seen again by the prof about vent and fee. He is talking +ve about Betty and her progress.”
7th June 2018
“12pm ventilator out CPAP on. Morphine stopped. Milk increase to 14ml every 2 hours. Longline in situ. Restarted Morphine 5mcg. First sneezes. First cries. First coughs. Lots of spit bubbles! Jaundice lights/lamp. First vomit…”
The first cries I mention in this little note are not the cries you expect to hear when a baby is born. It was a silent cry. Her face screwed up ready to scream but no sound came out. Just a pained look on her face. It was heart breaking to watch. I remember that, I turned away the first time I saw it. Then the guilt hit me in the gut. I put my hand on her, I tried to comfort her. But it wasn’t the same as being able to pick her up and wrap my arms around her. All I could do was place my hands gently on her head and bottom or feet, and hope that she felt the love oozing out of my heart and into hers.
8th June 2018
“register Betty’s birth.
Belly button lines out. Chest X-ray done. New cannula right hand for HAS (human albumin solution). More settled with mussy under neck. Up to 10ml per feed.
Kyle fluid in chest drain, re-testing to make sure…stopped breast milk and plan is to use formula for 2 weeks then re-test chest drain fluid to check if chyle fluid is gone.
Dummy! Going well. Nasal CPAP prongs in. Going well. Bought blanket from Etiquette. Feeds stopped.”
The Prof had noticed that the colour of the fluid in the drain was a bit cloudy and he said it looked like ‘kyle’. I just heard the name Kyle and thought it was a bit weird but he explained what this was. It was actually Chyle and is a type of fluid. So, Betty now had another diagnosis. Chylothorax. This is (putting it very simply) a type of pleural effusion. Chyle is a milky fluid which is formed when the body digests fat. It is absorbed by the intestines and drains into the lymphatic system. The lymphatic system forms part of the immune system that identifies and fights off invaders, such as bacteria and viruses. There is a network of vessels within the body through which lymph circulates. The lymph drains into the blood through the thoracic duct in the chest (https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/chylothorax). I have taken this explanation from the above website because I am not a doctor or a specialist in Chylothorax! Please do read more about it if you would like to, I find it really interesting because it directly impacted Betty.
Chylothorax can be present at birth but this is very rare. In Betty’s case, no one is actually sure what came first, the hydrops or the Chylothorax. It is possible that one caused the other but we are still not sure and we likely will never know. I will up-date this blog following our up-coming appointments with various medical teams we are under. But one thing I know for certain is that Dr T in Portsmouth identified Chylothorax as a possibility on day one! With no tests or evidence, he said that his opinion was a problem with Betty’s thoracic duct, which is Chylothorax. Dr T once again was right. One thing that has just popped into my mind is that Dr F in Southampton had been trained by Dr T, and this was another reason we felt so safe in her hands (Dr F was Bettys lead consultant in Southampton).
Now what Chylothorax meant for us, for Betty and for me, was that she had to stop having my breast milk (she was being fed via a nasal gastric (NG) tube). My breast milk, well everyone’s breast milk, contains long-chain fatty acid. In Chylothorax, this is what gets dumped into the pleural space and so Betty needed to stop having my milk immediately. She was on only TPN for about 24 hours and then was put on a synthetic milk called Monogen. My inner voice ramped up again at this point. My breast milk was poisoning my baby. I was poisoning my baby. Not only had I completely failed her in pregnancy, but I continued to do so out of the womb. This thought process became normal to me and still to this day, I believe that I poisoned her, unknowingly yes, but the fact remains.
Chylothorax can self-right itself and so the plan was to stop breast milk for a minimum of two weeks and a maximum of 6. This is standard procedure for people of all ages with Chylothorax. We were told that if this did not work, there is a medication that can be used to try to fix the problem and the worst case would be surgery. But we had options and it was treatable, this was positive. I continued expressing because it was anticipated that Betty would restart having my breast milk once the Chylothorax had resolved. Betty was starting to deflate by now, the swelling all over was slowly but surely reducing and bruises appeared under her gorgeous eyes and her chin. We were told the bruising was from the resuscitation, that the mask would have been held firmly down on her little puffy face in order to revive her. A little bruising didn’t faze us. It was the very least of our worries and I think it gave Betty an edge, a bit of a gangster look! My little warrior princess.